Even a decade later I still worry before going to see a specialist the next day! Why? Even after all this time I am never sure of whether it will be a productive visit or not. I can never be certain.
I must also admit that the challenges I face to even get to the doctors office are also a huge factor to my unrest. The pain and difficulty to get there, the waiting and then finally to sit and list all the issues that have been worsening over time is also hard to look forward to. I often wonder do others feel the same?
Why do I bother? Blind hope. Hope that something might be suggested or offered to make life a little more bearable. The eternal hope of all Autoimmunes.
I have been constantly informing my doctor of things that have happened or increased via telephone and email but she always insists that I come see her, no matter how much of a physical challenge that is for me. It doesn’t really make any impression on her or change her requirements.
Skype? My previous doctor agreed to Skype consultations but my new doctor does not. Why? I don’t know. It’s just her policy. Perhaps the regulations and payments have changed so she can not charge the same amount. I don’t know. As patients we are never told why regulations or policies change or are even considered in the decision process. Governments and doctors will decide what they wish. It feels so ridiculous. I am a tax payer but I have no real say in my care on many levels.
So… it’s painkillers and sheer will power to get to her office. She won’t even alter her practice hours to include afternoon consultations for her patients; although I barely sleep for more than several hours each night and struggle to get ready inside two hours each morning.
It usually means I don’t go to see her often, despite the pain or disability I have. I just can’t meet her expectations and requirements.
Am I important? Are my needs important? I can’t help but wonder sometimes. I have been seriously considering reducing my visits even further.
Tomorrow I will have to tell her again that I could not cope with the latest biologic I was prescribed. It will be my third. I feel quite saddened by this and there is a growing sense of hopelessness inside me. I try not to give way to it but it’s hard. Will she suggest another? Have I run out of options? Has my increased pain and symptoms mean that I am no longer responding to any of the drugs I have been taking all this time? Have they become ineffective? It has happened to so many other fellow sufferers, perhaps it is happening to me now…What next?
I must admit that my greatest fear of all is that the growing pain and difficulties will only worsen and I am powerless to do anything about it. That she has no options left for me.
My quality of life has worsened dramatically over the past years and so I can not think beyond day by day management. The thought that I will be left with this level of pain forever is more than I can emotionally cope with. So I don’t think about it. I can’t let myself.
The result of several Autoimmune diseases has been worse than I could imagine and more than I can now explain to each doctor; and each doctor never sees the whole picture and will only focus on their own particular interest, regardless of how it all effects each other.
I feel trapped. An autoimmune Catch 22.
What next? I don’t know … that is really the hardest part about the night before a visit for me. The unknown.
Perhaps others can relate?